Real Life

Pilots Help Boy with Rare Disease

Kristine became concerned when her son, 2-year-old Zeq, weighed only 19 pounds and was severely malnourished. His body rejected all foods, and Kristine had to continue breast-feeding him since that's the only nutrition he could tolerate. He also would scratch his arms and legs until they bled. When Kristine took him for allergy tests, he was positive for every food. The family went to an immunologist at Johns Hopkins in Baltimore, who diagnosed Eosinophilic Esophagitis or EoE.

EoE is a rare disease that occurs when eosinophils, a type of white blood cells normally found in the bloodstream, collect in the esophagus instead. The cells attack foreign objects in the body to protect from disease, but in the esophagus they're deadly. Eosinophils attack any food the patient swallows as if it were a foreign object, making him allergic to every food. To diagnose EoE, immunologists test for the amount of eosinophils in the esophagus. One thousand eosinophils is considered high. Zeq had 80,000!

Zeq has 11 doctors at Johns Hopkins working on his case. He received a chemo drug to lower the cell count in his esophagus and inflammation in his gut. He also uses a feeding tube and eats every 4 hours.Kristine wakes up twice nightly to administer the feeding. The entire cost for Zeq's treatments, travel, and medications is staggering?about $35,000 a year.

Fortunately, Angel Flight of Maryland has been able to relieve the burden and expense of travel?the family has to go to Baltimore at least once a month. Because of Angel Flight, "we're seeing the best doctors in the world," Kristine said.

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